22.1 Research in Palliative Care Flashcards
List 2 current gaps in palliative care research
- Very few RCTs
- Few studies include patients with short survival
List 2 benefits demonstrated by early involvement of palliative care
- Cost effective and leads to better patient and caregiver outcomes
- Early involvement during anticancer treatment in patients with advanced disease has beneficial effects on symptoms, psychological distress, and survival
List 4 barriers to palliative care research
- Lack of funding
- Due to #1, insufficient scope and size of studies to provide conclusive results
- Difficulty attracting experienced researchers
- Low scientific value
- Insufficient institutional support
- Uncertain career structures
- Pall care misconstrued as end of life only
- Pall care not perceived as integral part of health care/research
List 4 ways to support future developments in palliative care research
- Challenge established, well-sized research groups to further develop pall care research
- Establish national and international funding programmes that provide predictable funding
- Increase the public awareness of the importance and impact of palliative care research
- Increase the attractiveness of palliative care research by offering part-time positions making it possible to combine research and clinical work.
Research governance includes which 5 domains?
- ethics (dignity, rights)
- science (research quality)
- information
- health and safety
- finance and intellectual property
List 3 important issues to be aware of when it comes to informed consent by palliative care patients
- Patients may feel obliged, so avoid having MRP ask for consent.
- Most patients with advanced disease are eager/appreciate being asked to participate (HCPs assume otherwise)
- May be unethical not to ask - patient should be the one to decide ( or SDM, cognitive impairment does not always preclude)
Define systematic reviews vs. meta-analyses
Why are these studies increasingly important
Systematic reviews involve gathering, appraising, and synthesizing all available evidence to answer a particular questions
Meta-analysis is a type of systematic review that combines results from multiple studies (preferably RCTs)
Importance:
- comprehensive
- scientific design reduces bias
- increased reliability
- powerful as aggregate large amounts of data
Aim to increase power, improve estimates of effect sizes, and resolve uncertainty when reports disagree
List 3 population characteristics studied by descriptive epidemiology
What are the 3 major categories of descriptive epidemiology?
How are the findings of these studies helpful?
- prevalence
- incidence
- patterns of disease/health
Major categories are: individuals, time, and place
Helps determine health needs and access
Guides planning and delivery of healthcare services, adjusting for unwanted inequalities (in effectiveness, efficiency, and accessibility)
List 3 quantitative epidemiological methods
- population-based surveys
- use of death certificate data to study place of death
- studies of routine administrative data at the population level (can link with disease-specific databases)
List a major challenges in designing valid palliative care studies
Very heterogenous patient population
(no clear defining classification)
internal validity: degree of confidence that causal relationship being tested is trustworthy/not influenced by other facors
external validity: degree to which results of study can be applied to other groups/situations
You are planning a clinical trial. You base your question on a clinical observation from your day to day practice.
Outline the steps of setting up your research project.
If you decide to pursue an RCT, what might be advisable as a 1st step in planning?
Box 22.1.1:
- Describe the clinical problem or observations that prompted the idea for a study.
- Discuss relevance/validity of the observations in a multidisciplinary setting, with clinicians, nurses, researchers. Seek advice from a statistician early on.
- Perform comprehensive literature reviews to find out what is known about the topic.
- Formulate your hypotheses and research question(s) to define the aim of the study.
- Define the patient population.
- Decide on the appropriate study design.
- Decide on the outcomes to be measured.
- Consider if the research team actually has access to the desired patient population, and estimate the approximate number within a given timeline.
- Start writing the protocol.
(Advisable 1st step for RCT - a pilot study to test study design/anticipate challenges)
Why are RCT’s difficult to design in the palliative care?
List 2 types of studies that could be pursued instead?
- patient’s high symptom burden and shorter life expectancy = higher atrrition rates
2.
qualitative or mixed methods studies
or cluster randomized designs
